Saturday, February 13, 2016

Knee Pain and the Ghost in the Machine

I’m going to delay part two of the Morton’s neuroma thriller just once more, which I imagine no one will protest, as I’ve received no comments specifically on the issue of neuromas.

I want to go back to last week’s subject, because TriAgain made an important comment.

First, I have a fear sometimes of becoming facile, of lapsing into can-do boosterism and tired platitudes (“Just move! You just need to move!”). That’s one reason that I liked last week’s subject, on breakdown points, because I remember doing some hard, original thinking for the first post, a few years ago.


What TriAgain put his finger on (“there may also be other systemic problems”) was a really difficult, intriguing piece that I honestly don’t have much of a clue about (and neither do your doctors, I suspect). Yes, there are breakdown points, and when you lurch beyond one, you can suddenly go from the blissful absence of any pain whatsoever to a nagging injury that just gets worse and worse.

But once you’re on the wrong side of no pain/pain, is it simply a matter of fixing an overstressed structural component (cartilage or whatever) to return to a previous healthful, pain-free state?

Maybe not. As anyone who read my book knows, I turned into a bit of a mess. At one point, it wasn’t just my knees but tendinitis in both forearms, along with terrible back pain. Happily, once I conquered the knee issue, I also managed to get on top of the other problems. So I did succeed in crossing the no pain/pain divide in the right direction.

But what exactly were those other problems? Were they related? And, if they were, perhaps once some malevolent systemic genie has been released from its cave, it can be really hard to get that thing quieted down and back inside again.

I know TriAgain suspects that complex regional pain syndrome is at least partly to blame for what his knee pain has morphed into. After checking out the CRPS symptoms, I can say that most of them don’t align with what I had.

But still.

When I had the chronic knee pain inflammation/irritation, I started to get the feeling that I was chasing a poltergeist that was loose in a many-roomed house. If my knees felt a little better on a particular day, some other joint would feel a little worse. Very weird, I thought. So I asked my general physician if all the joint pain could be related, and he assured me “no,” with this look as if he were humoring a naive child.

But the more I read everyone’s stories here, the more I am convinced that there is very often something systemic that slips in through the back door with chronic knee pain. It isn’t there at first. And it isn’t there for everyone. But I almost get goose pimples on my arms on reading all these accounts of knee pain sufferers who thought they too had rheumatoid arthritis.

So sometimes, when I’m rattling off my thoughts on healing and feeling a bit facile (in that way you can be when your chronic pain recedes to a distant memory), I get a little jerk-back to reality and sense of humility on realizing there’s a whole lot I never did understand. Like whatever that systemic issue was.

With knee pain, I believe there can be a kind of ghost in the machine, a nasty something rattling around inside you, wreaking havoc. But how that thing works, I really don’t know. Hopefully, in the years to come, someone in the medical field will discover some answers to the questions we have about that systemic part, and I can report back the findings.


  1. This post speaks to me greatly. My knee pain has morphed into pain everywhere. My blood work is fine so doctors are quick to brush off my concerns. I also notice that on days where my knees are calmer than normal - other joints hurt more. Or I have a brutal headache, or something!

    Triagain's story is very VERY similar to mine.

    Take care everyone,

    1. I forgot to add....Richard I am curious about your Morton’s neuroma story!

    2. About 6 months after my struggle with knee pain began, I developed a different kind of pain in most of my other joints. I was screened for rheumatoid arthritis are several other systemic disorders and all my tests came back normal. To cut an extremely long story short, it turned out that all my joint pains (with the exception of my original knee issue) were caused by food intolerances. I went on the RPAH Elimination Diet (FAILSAFE diet) with the help of a Sue Dengate-approved dietitian and discovered that I am sensitive to dairy, soy, gluten, salicylates and amines (the latter two are natural chemicals that occur in foods). Eliminating dairy and soy from my diet put my rosacea into remission after 5 years on medication (which I no longer have to take!), eliminating gluten cured me of abdominal bloating, eliminating salicylates took away my joint pain completely after only 2 weeks on the elimination diet and eliminating amines prevented me from ever having another headache. Amy

  2. 3 motion-based success stories I have stumbled upon which people in this community may find helpful and encouraging: 2 of them walked their knee pain away, the other cycled and swam. Hopefully in the future we can each add our story to help add to the currently entirely testimony based evidence base...

    1. Very interesting Tim, esp the first link. It aligns well with my experience, esp the concept of finding the sweet spot which is just enough to stimulate healing of cartilage, but not so much as to make things worse. Finding this sweet spot is really difficult. But I fully agree with his theory that some load is needed to stimulate recovery, but that load will vary enormously from case to case, and the standard recipes trotted out by most medicos can't cater for this variation.

      Our youngest daughter is a keen exerciser and runner, who has been getting knee pain on and off for years. She visited the local physio and got the standard old VMO strengthening crap (squats, lunges, weighted sitting leg extensions). I warned her that all those things esp the last one sent me backwards and guess what, so too it did for her. Thankfully, she stopped doing them instead of blindly pressing on and making it worse as many would, trusting in the 'expert'.

      As I've said before, my knees can handle deadlifts (3x8x40-50kg)and kettlebell swings (3x10x16-20kg), but not cycling. Recently I discovered they can handle 3x40secs of skipping! Can you believe that! Any mainstream medico would say skipping is too much impact. I'm now also up to 14mins of easy jogging on the treadmill (in 5/4/3/2/1 min blocks with 2min walking inbetween 2x/week).

      Based on the Dr Scott Dye 3 dimensional diagram of knee stressors, I've discovered that high levels of flexion (greater than about 75-90 deg) are my biggest problem. None of the exercises above exceed this angle. But cycling will. So does squatting.

      There is no single silver bullet answer to this stuff. You have to figure it yourself by trial and error. The key guiding principal is that some movement is needed to stimulate healing, but how much and how to progress it you have to largely figure for yourself.

    2. TriAgain,

      Can you explain a bit more about Dr Scott Dye's 3 dimensional diagram of knee stressors and how you incorporated that advice into your knee regiment?

      Do you still have the burning sensation daily?


    3. Alex

      The Dye 3D diagram has 3 factors which determine where you are within your envelope of function. These are:
      - Load
      - Frequency
      - Degree of flexion
      His theory is if you exceed your envelope of function too often for one or a combination of these, your knee gets worse.

      It's taken me 3.5yrs of trial and error to form the opinion that load is not such a problem for me (I can do deadlifts etc), nor is frequency (I can walk a long way OK) but flexion is a big problem (anything that takes my knees past about 75deg bend) and a combination of flexion and frequency is also a problem (e.g. cycling = lots of frequent knee bends).

      I really wanted to cycle again, but at this stage it is not to be, so to stay within my envelope of function I:
      - walk
      - swim - but with a pull buoy and ankle band to mininmise kicking. Not really sure why freestyle kicking is such a problem - maybe frequency?
      - a gym circuit which I do fast for 20-30mins including - Boxing on speedball/bag, Half supermans (for lower back) or crunches, Deadlifts, Kettlebell swings (front and sideways),Benchpress, Chinups, Pullups, Skipping with rope (3x40secs - you'd think that would be a big problem, but no), Lateral band steps (crabwalk), Planks

      I don't do all of these every session, mix them up, do it fast with no more than 10 secs rest between exercises. HR hits 150-160 sometimes.

      But it's taken me 3.5yrs to get to this stage. For the first 3yrs or so, I just did walks (20-30min), freestyle swims no kicking, some upper body weights. Every now and then I'd try cycling or jogging and it would end in tears. So eventually I just stuck to what I knew I could tolerate.

      Yes, I still get daily burning sensation, though far less severe than it was at its worst. My knees still don't feel 100% normal, but they are much better than they were.

      And sometimes I do something stupid (e.g. squat down when fishing) and the pain cranks right up, but now instead of being a 2 week setback, it only lasts a day or two.

    4. Great stories, Tim, thanks for sharing. It's always helpful to hear how other people beat knee pain.

  3. I’ve thinking and reading a lot around exactly this issue. I have 3 theories:
    1. Pain is an output not an input. And the extent we feel pain is based on our perception of the threat. So in my case I was going along happily running swimming and cycling like a fiend and a few aches and pains here and there so what that’s normal. It was only when the pain in my hips reached a point where it stopped me in my tracks that I suddenly thought Arthritis! The threat level in my brain went to red alert and all those little aches and pains around my body suddenly became a coherent picture of massive joint damage. The actual level of physical damage hadn’t really changed that much but the perception of it changed. My brain then turned up the volume on pain. Check out Dr Lorimer Mosely’s talk on walking in the bush and pain.
    2. I don’t like this one at all but according to this blog your nervous system can cause cartilage damage. To me it looks like he’s trying to explain away the lack of correlation between MRI findings and pain but essentially we’re potentially saying that stress leads to damage so if you suddenly feel stress because your life of exercise and happiness is transformed into one stressing about what’s going on with your body that can bring on more real damage.
    3. This is my favourite theory because it makes everything eminently reversible. The pain we all feel isn’t actually related to any physical damage, it’s caused by emotional stress. Emotional stress leads to physical symptoms. This may seem really hard to accept but I have reads tens of books, seen 1000s of examples case studies etc. That this happens and it’s extremely common isn’t really in any doubt. The question for all of us is, is it me? So in my case yes maybe there was a real injury. It healed but the stress of thinking that I was heading for imminent disability and joint replacement then caused a cascade of pain. The stress you feel doesn’t need to be hugely traumatic – it can be just an accumulation of mild stressors. One experiment I love is where a very low velocity car crash was simulated – so low that it couldn’t cause any physical damage. 20% of the subjects developed whiplash. 20%! Not only that but the folk conducting the experiment could predict with 90% accuracy which subjects would develop symptoms based on their psychological profile. They were the ones with more stress in their lives. The paper is called “No stress, no whiplash”.
    It is now pretty widely accepted that lower back pain is basically just stress related. There’s virtually no correlation between what you see on MRI and back pain. Herniated bulging disintegrating discs – everyone’s got them and most folk have no pain. Pain scientists are now beginning to extend this to other joints. 80% of people with radiographic hip arthritis have no pain. Similar stuff with knees. So the pain we all feel is real but is it caused by the damage that we all have (if we’re over the age of 20)? Or our mind letting us know that it’s time to get a new job or deal with the stress we experience differently? Check out this guy for one example chosen at random.